MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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368 “I do feel under pressure to lie about my progress…I suppose she sees her programme as a neat formula: ‘If you do x and y then that equals z’, so if it doesn’t work for me then I must be at fault. “…I am feeling like a massive emotional burden has been lifted off me today because I have formally withdrawn from my GET programme…I just cannot go through another session with that physio, even if it’s just by telephone. “…I am not clinically depressed….I wonder what people who are depressed would feel like….It is not acceptable for patients to feel belittled, criticised, patronised and tearful after a GET session. Having made a complaint, the diarist records: “The service lead has also withdrawn me from the self‐management group. She says it’s a waste of my time and if she had thought it was right for me then she would have referred me there herself when she first assessed me. She said she cannot see it being of any benefit to me…She said if she was in my shoes then she wouldn’t want to do it. “…the service lead said that GET has a one in three success rate and that I clearly fell into the two people that don’t respond to it. She said it was not my fault that it didn’t work”. These extracts from the diary of a GET participant reveal how mistaken it is for the authors of the PACE Trial Manuals to focus on “unhelpful thinking patterns” and on “thinking errors”. Furthermore, the extracts reveal many breaches by the physiotherapist of the NICE GET treatment protocol set out in the 2007 Guideline (CG53) and people are wondering if all the therapists in the PACE Trial took the same approach. The answer is that the approach is “manualised”, so it is likely that the same approach has been used with other people.
Quotations from the Therapists’ Manual on APT 369 Of all the PACE Trial Manuals, this 183 page Manual seems to be the most poorly‐conceived and ill‐written. In his reply to comments about the published (abridged) Trial Protocol, Professor Peter White stated about the APT Manuals: “The manuals were developed in conjunction with and fully approved by the patient charities Action for ME and Westcare (before they merged)” (http://www.biomedcentral.com/1471‐2377/7/6/comments ). The Investigators claim that APT has been used in response to patient feedback and support from various groups, but APT is not “pacing”; there is no description of APT in the public domain, so the claim that it was included because patients find it helpful is difficult to understand (Co‐Cure RES: 4 th February 2010). The PACE Trial Investigators’ unfavourable views about pacing were already known. In 2002, the same year that Peter White applied to the MRC for funding for the PACE Trial, commenting on the Chief Medical Officer’s Working Group Report on CFS/ME and acknowledging the input from Professor Michael Sharpe, he wrote about pacing: “Some clinicians could not agree to recommend ‘pacing’ on the basis of patient group experience alone, without any evidence of efficacy….The English report’s recommendation omitted any suggestion that CBT and GET should be more readily available; something that would have been helpful since the unavailability of these treatments is the real issue in this country…These recommendations were obfuscated by equally promoting ‘pacing’, in spite of the lack of research evidence for its efficacy…The one clear difference between pacing and the more active CBT and GET is that activity levels are limited by symptoms in pacing….The theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill‐health” (Editorial: Postgrad Med J. 2002:78:445‐446). The published (abridged) Trial Protocol states about pacing that it: “may reduce symptoms, but at the expense of not reducing disability” (BMC Neurology 2007: http://www.biomedcentral.com/1471‐2377/7/6). The Therapists’ Manuals, however, state that all the interventions used in the PACE Trial may be considered forms of pacing ‐‐ as mentioned above, the “Summary of Therapies” in the Manuals for Therapists and in the SSMC Manual describes APT as “simple, non‐incremental pacing”; CBT as “complex incremental pacing”, and GET as “simple incremental pacing”. Furthermore, the Full Protocol (final version) states: “All the participating clinicians regard all the four treatments as potentially effective”, which contradicts Professor White’s own views about pacing. The Minutes of the Trial Steering Group meeting held on 27 th September 2004 record that Professor Jenny Butler (an occupational therapist) “expressed concern that the APT manual appeared to be considerably smaller than those for CBT and GET. Recommendations including copying the format of the GET manual for information on engaging the patient, the initial assessment and troubleshooting such as ‘what to do if your therapist is on holiday’ (sic). It was stated that APT should have equal face validity to the other therapies and because this was a new treatment and one advocated by patient groups, it was important to make this treatment of equal quality”. Action 31 in the Minutes records: “Professor Sharpe to lead Diane Cox in making the recommended alterations to the APT manual”. The authors of the APT Therapists’ Manual obviously listened to Professor Butler; they increased its size by the use of: • repetition • repetition of the repetition (using many almost identical quotes from an AfME survey) • what appears to be obvious “padding” by using superfluous explanations of elementary concepts • extraordinarily large font sizes • pages containing only one or two sentences • large diagrams as apparent space fillers. By trying to turn what is common‐sense (ie. the avoidance of over‐exertion) into a “therapy” (ie. APT) and by providing a “Manual” for this “therapy” (a Manual which amounts to little more than a collection of
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MAGICAL MEDICINE: HOW TO MAKE A DIS
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Section 3: Consideration of the MRC
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5 MYALGIC ENCEPHALOMYELITIS/CHRONIC
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Introduction MAGICAL MEDICINE: HOW
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9 associations purely in order to
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11 “It’s not an illness that pe
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13 release that is not found in hea
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15 “The second clinical implicati
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17 In January 2003 the wife of Rich
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19 biomedical aspects of ME/CFS wer
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“Social factors 21 “Several of
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23 Despite the substantial evidence
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25 as possessed by devils or spirit
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27 However, as Crombez G et al poin
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29 Professor Anthony David’s resp
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31 From these beliefs of the PACE T
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33 warning about dependence being e
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35 This is unequivocal: according t
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37 Those studies, however, have bee
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39 The answer may be found in the f
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41 than giving actual numbers of pa
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43 deconditioning caused their illn
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45 Legitimate access has been obtai
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47 Goldstein’s search took a litt
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49 says about GET: “GET will be b
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51 The whole concept of “a CBT mo
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53 International concern about the
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55 The CISSD project was the brainc
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57 are changed in IBS lends credibi
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59 (http://www.entretiens‐du‐ca
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61 As Jonathan Rutherford, now Prof
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63 There are many who would profoun
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65 The term “CFS/ME” was carefu
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67 ill‐health and disability is d
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69 “The sick role does have advan
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71 Such is the influence of the Wes
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73 Editors of broadsheet newspapers
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75 Collins J who found that the UK
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77 The “Invitation to join the PA
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79 On 10 June 1988 Wessely provided
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81 “There is a record of a confid
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83 (6) Another, more recent illustr
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85 psychological hypotheses of caus
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87 Of particular note are the follo
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89 • “Two forms of treatment…
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91 patients with chronic fatigue st
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93 • Another UNUM policyholder, A
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95 “Over the twenty years I have
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97 a functional somatic syndrome),
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99 protein and serum amyloid A (whi
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101 their cortisol response, in tha
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103 exposures. Responsibility for t
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105 illness (and) these biases have
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107 diagnoses before (ME)CFS onset,
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109 He noted that: “The most extr
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111 According to Professor Nancy Kl
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113 95% have abnormal cognitive‐e
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115 In 2003 a UK study of skeletal
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117 “ME/CFS describes a disorder
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119 proposed for treatment‐resist
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121 page 381: “Arrhythmias are fr
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1995 123 “The use of cardiopulmon
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1999 125 “This study examined the
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127 cardiac output. This present st
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2005 129 On 10 th April 2005 Carol
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131 The next system to be compromis
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2005 133 Researchers at the US Cent
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135 In ME/CFS, these serious issues
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137 confirms reduced functional cap
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139 haemodynamics and an increased
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2000 143 In 2000, the CFIDS Associa
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145 includes haemodynamic assessmen
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2003 147 German researchers Siessme
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149 producing any evidence of damag
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151 English and Australian reports
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2006 153 “(ME)CFS is a poorly def
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155 These recommendations note that
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161 symptoms not currently in the C
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1999 163 An article from researcher
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2003 165 “(ME)CFS is an increasin
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167 Commenting on this paper, Dr Ne
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2007 169 “For decades, (ME)CFS pa
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171 Documented abnormalities in the
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1996 173 De Lorenzo et al noted tha
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175 identifying biomarkers…It is
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1955 179 Acheson described and comp
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181 (In the light of the discovery
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183 psychiatric symptoms…as commo
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185 The presence of the LMW RNase L
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187 to investigating the bioavailab
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189 the blood of patients with AIDS
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191 displayed by (ME)CFS patients.
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193 Moreover, recent research has s
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195 In August 1991, together with c
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197 “The data do not support the
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199 Lerner Research Institute who i
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201 It is regrettable that the UK M
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203 Notably, Dr Stuart Le Grice, he
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205 that the majority of patients f
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207 “Just because one is blessed
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209 They would do well to remember
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211 itself said at the time: “stu
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213 muscle, endocrine and lymphoid
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215 “ ‘I don’t take the Briti
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217 “This is a major concern give
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221 impinge upon medical decisions
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SECTION 3: Consideration of the MRC
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225 such as multiple sclerosis in w
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227 of 600 participants. Issue 3 of
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229 Dr Gabrielle Murphy is/was part
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231 trials…are open to the charge
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233 Given that the Oxford criteria
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235 maximised by the collaboration
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237 c) I had been told by Dr. X (th
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The Investigators’ Reasons for th
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241 In his presentation entitled
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243 Peter White, however, asserted
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245 To many people, it is incompreh
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247 In her communication of 16 th J
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249 a) emotional lability….b)…d
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Undue influence on the PACE Trial o
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253 Pensions) and copied to the PAC
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255 only one database. This will be
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257 Conflicts of interest of those
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259 • a copy of the original prop
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261 There is another curious aspect
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Fraudulent research (Cargo cult sci
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265 It seems that, in comparison wi
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267 Initially, the Trial Investigat
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269 Information on other abnormalit
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271 It is notable that advising exe
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273 “Outcome choice bias: Sometim
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275 say that they have physical sym
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277 consent requires that the parti
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279 If in the PACE Trial the Wessel
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281 “Enhanced negative‐feedback
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283 health problem. There is no des
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The Handbook continues: 285 “Main
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287 Mark Seddon, a member of Labour
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289 Section B covers “Basic princ
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291 To combine all states of “med
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293 PACE Trial includes those who d
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299 White treating this as a purely
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301 “ Attempting to come to a con
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303 “CFS/ME” on State benefits
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307 could he require Primary Care T
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309 The Judge said: “The ‘psych
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311 they so desperately need and de
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313 condition that is seen by many
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315 17 th July: 1‐8 (Epub ahead o
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Page 381 and 382: “Budgeting Energy: � Evaluating
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Page 409 and 410: 409 APPENDIX I: Dr Tony Johnson, De
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Page 417 and 418: 417 Appendix III: Dr Melvin Ramsay
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419 • “It is not only people in
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421 “It will be imperative that h
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423 “It is important to understan
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425 with what look like exhaustive
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427 To date, MPs’ postbags contin
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429 APPENDIX VI: The Wessely’ Sch
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431 They explain that historically,
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435 • deniers engage in “comple
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APPENDIX VIII: Two FINE Trial Case
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439 After four months, Miss C’s h
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441 What an extraordinary claim: wh
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